Awakening Australia to Rare Diseases: Symposium Report
Author Information
Author(s): Hugh JS Dawkins, Caron M Molster, Leanne M Youngs, Peter C O'Leary
Primary Institution: Office of Population Health Genomics, Western Australian Department of Health
Conclusion
The symposium successfully engaged stakeholders to recommend the development of a National Plan for rare diseases in Australia.
Supporting Evidence
- The symposium was the first of its kind in Australia, focusing on rare diseases.
- More than 160 speakers and delegates attended from various countries.
- Participants expressed the need for a single voice for those living with rare diseases.
Takeaway
A big meeting happened in Australia to talk about rare diseases, and everyone agreed that we need a plan to help people with these diseases.
Methodology
The symposium included plenary sessions, small group discussions, and an end-of-forum survey to gather participant feedback.
Limitations
Feedback is still being analyzed, and the outcomes are preliminary.
Participant Demographics
Delegates included people living with rare diseases and representatives from various organizations and countries.
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